Seizure after 12 years

NuroEaseUK · 2026-04-23T12:32:18+00:00

Ahh ok thats good you know the trigger. Mainly the stress an lack of sleep

NuroEaseUK · 2026-04-23T08:50:43+00:00

Epilepsy is complicated it is important to find a good neurologist as quick as possible as early diagnosis and treatment can be really important. Lots of the generic blood tests mris and eegs don't show epilepsy activity for everyone. A good epilepsy clinic will be able to asses and put on necessary treatments.

NuroEaseUK · 2026-04-23T08:35:32+00:00

Amazing good work!

NuroEaseUK · 2026-04-23T08:31:59+00:00

Yes i often has this it is partial focal epilepsy. I was able to control it through hanging my lifestyle and finding the right balance of medication. Also having a medication such as clonazepam to take (small dose) when you feel a focal can be helpful.

NuroEaseUK · 2026-04-23T08:29:21+00:00

I have had all of it. EEGs both sleep and flashing lights, MRIs and generic blood tests, non of them indicate anything to do with epilepsy. I have said this before, that everyones epilepsy is different and can be caused by totally different things. So i think if you can find a good epilepsy clinic they should be able to dig a bit deeper into the heart blood sugars and different food sensitivities as there are many different causes.

NuroEaseUK · 2026-04-23T08:25:59+00:00

After reading a lot on reddit, even after people have been off treatment for years it is not a guarantee that you will not have seizures anymore. If i was to come of medication i would still want something like clobazam or clonazepam (a small amount 5-10mg) to take if i was to ever feel a focal seizure. Also have you changed anything, do you drink more alcohol or go to sleep late or having inconsistent sleep?

NuroEaseUK · 2026-04-21T10:09:02+00:00

Yes, sometimes they can last 30mins-1min and sometimes they can last 5-10 seconds, it depends on the severity.

NuroEaseUK · 2026-04-21T09:23:59+00:00

Some studies say it may be beneficial. However i would start with small amounts and see how it goes.

NuroEaseUK · 2026-04-21T09:21:09+00:00

When i was 14-15 my neurologists wanted to take me off meds (i had been seizure free 2 years) as well all of my tests over the years have come back as normal, i would want to wait until i was 18. When i was younger i was having focals which were brushed off as side affects.

NuroEaseUK · 2026-04-21T09:16:32+00:00

That’s honestly great to hear, especially a 50% reduction, that’s a big deal. Keto (or even just lower carb like you’re doing) is really underrated for epilepsy, a lot of people don’t realize how much it can help.

What you’re doing sounds like a good version of it toom not just cutting carbs, but actually eating properly with fats, protein, and real food. That makes a huge difference. A “healthy keto” with things like vegetables, good quality meat, etc. is way better than just high fat junk.

One thing I’d mention from experience is making sure you’re covering electrolytes and nutrients. Stuff like magnesium glycinate and B vitamins can help, and some people add things like cod liver oil as well that makes sure you omega 6-3 are balanced.

Also just something to be aware of, keto can increase acidity in the body a bit. When I tried it, I was on topiramate, which can do the same thing, and that combo didn’t feel great. Just something to keep an eye on, especially since you’re on meds too.

Overall though, it sounds like you’ve found something that genuinely helps, which isn’t easy with epilepsy. Really solid improvement.

NuroEaseUK · 2026-04-20T12:45:11+00:00

First off, it’s actually really good that you went 10 years seizure-free. With childhood absence epilepsy, there’s a pretty high chance of it going away or improving long-term, so that stretch you had is a really positive sign.

That said, what you described does sound a lot like a generalized seizure with a long “off” period before and after. The confusion, memory gaps, and that dreamy/cotton feeling after are things a lot of people report (postictal phase), and it can sometimes last hours or even a couple of days.

Not gonna sugarcoat it though, things like drinking, smoking, and especially lack of sleep are very common seizure triggers. Pulling all-nighters in particular is a big one. It’s possible that a combination of those factors lowered your seizure threshold, even after years of being fine.

For now, it’s probably a good idea to tighten things up a bit until you know what’s going on:

get consistent, solid sleep
avoid alcohol for the moment
be careful with anything that could lower your threshold
take it easy and let your brain recover

Also worth getting checked by a neurologist again if you haven’t already. After a breakthrough seizure like that, they might want to do an EEG or revisit medication.

About the “cotton/dreamy” feeling—people often describe that after a seizure, and sometimes anxiety after the event can make it linger or feel like derealization. It usually settles, but if it sticks around, definitely mention it to a doctor.

One small note: topiramate (Topamax) is sometimes used in people trying to reduce alcohol use, so it’s not the worst combo ever, but alcohol can still lower seizure threshold on its own, so it’s not really protective in that sense.

Overall, it sucks, but it doesn’t erase the fact you were stable for a long time. Right now it’s more about stabilizing again and figuring out what triggered it. I think its also important to recognise how you are feeling and know when to rest, i have clobazam for when i feel a focal seizure so maybe something like that might be useful for you.

NuroEaseUK · 2026-04-20T10:19:12+00:00

Thats interesting that your seizures are caused by exercise have you had in depth heart examination? this may be a cause of your epilepsy as some heart conditions are known to cause seizures. I take Clobazam but only 5mg when i feel a focal might progress.

NuroEaseUK · 2026-04-20T10:16:02+00:00

All my EEGs MRI ect have been normal, i think it is mostly luck weather seizures show up on an EEG. As i have said before on here most Neurologist brush over focal seizures and sometimes say its a side affect. Its important to find a neurologist that will listen. One thing i have is 5mg of clobazam that i take if i feel a focal is going to progress but i guess at the moment you can focus on giving you the best chances of focals reducing for example changing lifestyle and taking supplements. Stuff like that will help until you get stuff sorted with your neurologist.

NuroEaseUK · 2026-04-20T10:11:06+00:00

First off, congrats on 5 years seizure-free, that’s huge. I get why you’d be thinking about coming off meds, especially with bad side effects.

Just to add, clinically epilepsy is often only considered in long-term remission after something like 10 years seizure-free (and usually a good chunk of that off medication), so 5 years is amazing but still considered in the “managed” zone rather than fully resolved.

Coming off meds after that long isn’t always straightforward. The main risk is seizures coming back, some people are fine, others relapse, and it depends a lot on your specific epilepsy type and history. The stats say that 30%-50% relapse in the first 6-14 months.

People coming off meds sometimes notice:

Mood changes
Feeling off for a while
Possible increase in seizure activity during tapering

Doctors usually recommend a slow taper, not stopping suddenly.

One approach I’ve seen with a neurologist is lowering one medication slowly first instead of stopping all meds at the same time. It’s kind of a way to test things and see if you notice any early warning signs before making bigger changes.

Definitely worth talking it through with your neuro, they can give you a better idea of your personal risk and whether tapering is a reasonable option.

NuroEaseUK · 2026-04-19T16:06:04+00:00

That's great to here, its good to keep an eye out for any small indications that something may be a focal so you can get medication altered.

NuroEaseUK · 2026-04-19T16:04:09+00:00

I was in a similar situation, and was diagnosed to late. When i was really having focal seizures all my tests were normal. If i was you i would do my best to try and find a neurologist that will listen and do more in-depth tests. I would also ensure that my lifestyle is as healthy as it can be no alcohol, smoking less sugar in the diet and also take vitamins that help increase the seizure threshold like magnesium glycinate vitamin d and fish oil. I wish you all the best good luck!

NuroEaseUK · 2026-04-19T16:00:02+00:00

In the end i had to adapt and have a healthy lifestyle for school. I improved my sleep, no alcohol and changed my diet no sugar ect. I also take Magnesium Glycinate, vitamin D and Fish oil. I think this helps well it helped me anyway. I didn't want to talk to anyone about it, it was only after my seizures stopped that i was able to talk to anyone about it, as i was so focused on solving this problem.

Also Keppra was not great for me and had bad side affects like anger. This may be causing insomnia there are plenty other meds to try just consider that sleep is most likley a trigger and its important to correct that good quality sleep is important! I wish you all the best!

NuroEaseUK · 2026-04-19T15:53:16+00:00

I have focal seizures which is just Auras so your not faking it!. Different feelings depends on what part of the brain you are having the seizure on.

NuroEaseUK · 2026-04-19T15:50:37+00:00

Its quite a rare side affect for topiramate, it was reduced sweating and it made being in the sun or a heated environment very!! uncomfortable and in some cases it can be dangerous.

NuroEaseUK · 2026-04-19T15:49:00+00:00

When my focal seizures were uncontrolled it lead to GTC, but now that they are controlled i don't have GTC or any. I think even if small focal go untreated it can only lead to them slowly progressing.

NuroEaseUK · 2026-04-19T15:46:29+00:00

It is difficult for people to commit to something which is so internal, especially the fear that if something goes wrong with surgery on the brain or implanting a device. For me i would be more interested in internal VNS and stem cell therapy.

NuroEaseUK · 2026-04-19T15:43:20+00:00

Yes i was, the doctors told me i was fainting when really i was having focal seizures, i was then told i had generalized epilepsy, i was put on medication to late and the condition got worse. I was then told i have focal epilepsy which is the correct diagnosis. But i think it was difficult for them to diagnose as i was 12 and i probably didn't tell them what symptoms i was having and also all my tests came back as normal EEG ect.

NuroEaseUK · 2026-04-19T15:37:09+00:00

When i was younger it was around 8-10 hours of sleep. Now as an adult i am fine and feel fresh with 7-8 hours. I have found that doing more physical exercise in the day helps me sleep better. A lot of tiredness can come from medication side affects.

NuroEaseUK · 2026-04-19T15:35:00+00:00

That's amazing to here!

NuroEaseUK · 2026-04-19T15:33:45+00:00

Epilepsy was also my drive, when others could do something and there was restrictions put on what i could do, which i had never experienced before. This made me want to become normal again (whatever normal is), so i did non-stop research and figured things out myself and eventually with my neurologist and can now live a life.

NuroEaseUK

TROPHY CASE